@MEActNet

A global network fighting for equality for Myalgic Encephalomyelitis. #MEAction #MillionsMissing https://nitter.cf/t.co/JhhNZoFYJi

 Global
meaction.net
Joined May 2014
  • Tweets26.2K
  • Following2.5K
  • Followers19.2K
5.1KMedia
In honor of #SevereMEday, #MEAction is honored to share the Severe ME Artists Project 2026! Over 100 of you submitted photos, drawings, writing, and videos of your work! We are thrilled to share so many amazing and powerful pieces of artwork. meaction.net/post/honoring-s… #SevereME
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Have you checked out all the amazing things Pillow Writers has going on lately? So many options! pillowwriters.wordpress.com/ They are an international ME/CFS writing community, free and open to anyone with ME/CFS or Long Covid. We are honored to host this amazing group! #pwME #pwLC
Calendar listing October events for Pillow Writers with dates and times in GMT and PST, featuring sessions like Early Pillows, Standard Pillows, Pillow Crafters, WIMEL, and Softest Pillows. On cream background with fall leaves at the top.

ALT Calendar listing October events for Pillow Writers with dates and times in GMT and PST, featuring sessions like Early Pillows, Standard Pillows, Pillow Crafters, WIMEL, and Softest Pillows. On cream background with fall leaves at the top.

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"I've spent my working life covering neglected issues. But few are neglected like the devastating chronic condition ME/CFS (myalgic encephalomyelitis..." @GeorgeMonbiot @guardian theguardian.com/commentisfre… #MyalgicEncephalomyelitis #pwME #MECFS

Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed...

Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot

theguardian.com
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"There’s a long, dark history here, rooted in centuries of dismissal of predominantly female illnesses as “hysterical”, and amplified in recent decades by government attempts to reduce the benefits bill and insurers’ attempts to reduce payouts."
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"We need to ask why so many patients have been abandoned, why discredited and dangerous treatments continue to be prescribed and why ignorance and neglect still dominate, in the health system and beyond. In other words, there has seldom been a stronger case for a public inquiry."
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#MEAction Network retweeted
Ror Preston@RorPreston
Sep 23
Whilst we know the average quality of life for ME/CFS patients is amongst the very worst for chronic diseases, I think in advocacy the true disaster that is severe / very severe ME has been significantly underplayed. New @wecrunchme visual on this topic 💙
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Registration is open for RECOVER-TLC’s 3rd annual workshop on Nov. 4-5, 2026. Virtual & in person options. web.cvent.com/event/e0be4010… "This two-day session includes keynote speakers, interactive panels, input from people with lived experience, and networking opportunities."
Save the date for RECOVER-TLC's third annual workshop on November 4 and 5, 2026, available in person and virtually. Registration is now open.

ALT Save the date for RECOVER-TLC's third annual workshop on November 4 and 5, 2026, available in person and virtually. Registration is now open.

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Our Scientific Director, Jaime Seltzer, is reporting out from the NIH conference -From Mechanisms To Medicine: Rethinking the Discovery-to- Care Continuum in Multi- System Disorders. Reporting from home today & in person tomorrow. Follow along: bsky.app/profile/exceedhergr…
Photo of Jaime Seltzer, MEAction Scientific Director, reporting from NIH's conference on multi-system disorders. Photo: a white woman with long dark hair pulled back wearing a black top and glasses and lightly smiles at the camera.

ALT Photo of Jaime Seltzer, MEAction Scientific Director, reporting from NIH's conference on multi-system disorders. Photo: a white woman with long dark hair pulled back wearing a black top and glasses and lightly smiles at the camera.

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Happy 1st day of fall! Changing seasons can be tough when you have ME. Can you even notice the change? I have learned that anything I can find any joy in is good to amplify. What do you find joy in? If this season is not one where you can find joy, sending you extra love!
Bright autumn leaves frame a clear blue sky with the text 'Hello Fall, Welcome cozy season!' and a heart symbol in the center.

ALT Bright autumn leaves frame a clear blue sky with the text 'Hello Fall, Welcome cozy season!' and a heart symbol in the center.

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The ME/CFS Exchange Webinar Series launches next month! First in the series will focus on post-acute infection symptoms. October 8th from 1 pm to 3 pm ET via Zoom. Registration required: rtiorg.zoom.us/webinar/regis… Hosted by NINDS in partnership with MECFSnet. #NIH #PwME #MECFS
MEAction shares that NIH announces ME/CFS Exchange webinar series starting October 8. Hosted by NINDS in partnership with MECFSnet. Text: Moderator and 4 speakers are listed. October 8th at 1 to 3 pm ET. virtual.

ALT MEAction shares that NIH announces ME/CFS Exchange webinar series starting October 8. Hosted by NINDS in partnership with MECFSnet. Text: Moderator and 4 speakers are listed. October 8th at 1 to 3 pm ET. virtual.

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Last #MedicaidMonday, we shared that CMS announced states may use a tier system to determine which Medicaid applicants qualify for the medical frailty exemption from new work requirements. Today, we are going to explain those tiers! #Medicaid #PwME #PwLC #disability
Medicaid 3-tier model with criteria for medical frailty exemption. What may qualify people for the medical frailty exemption? Tier 1: Diagnosis alone, which a doctor has recorded in their records, may meet exemption requirements. Tier 2: Diagnosis with other supplemental information - from past claims and clinical records the state collects for you - may meet exemption requirements. Tier 3: Cases that can't be resolved through available data. Submitting additional documentation may be necessary

ALT Medicaid 3-tier model with criteria for medical frailty exemption. What may qualify people for the medical frailty exemption? Tier 1: Diagnosis alone, which a doctor has recorded in their records, may meet exemption requirements. Tier 2: Diagnosis with other supplemental information - from past claims and clinical records the state collects for you - may meet exemption requirements. Tier 3: Cases that can't be resolved through available data. Submitting additional documentation may be necessary

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Tier 3: Cases that cannot be resolved through available data would proceed to individualized review and potentially documentation. Self-attestation is allowed in most states for 2027, but will be much more limited starting in 2028.
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MEAction advocates are talking w/ multiple states, urging them to put ME, Long COVID and other IACCs on their lists of conditions eligible for medical frailty exemption. We are also advocating that ME/CFS - which always impairs a person’s ability to work - be included in Tier 1.
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Applications are open for the NextGen IACC Scholarship! Trainees create original research projects using a pre-existing chronic disease dataset in this funded, mentor-led research opportunity. MS, PhD, & MD/PhD trainees enrolled in Canadian uni can apply. meaction.net/scholars-progra…
Photo of 4 adults collaborating in meeting room. Text: NEXTGEN IACC SCHOLARSHIP DEVELOP AND LEAD AN ORIGINAL RESEARCH PROJECT USING THE SYMPTOM CLUSTER CHARACTERIZATION IN COMPLEX CHRONIC DISEASE (SC4D) DATASET: ~1.5 MILLION DATA POINTS FROM 2,200+ RESPONDENTS WITH ME & ME/CFS, LONG COVID, POTS, MCAS, HEDS AND HYPERMOBILITY DISORDERS. Scholarship benefits: • CA$15,000 to support 50% research time over one calendar year • Protected access to dataset through the C-BIG platform • Statistics, data stewardship, scientific writing, visualization, peer-review, and clinical and lived-experience translation training • One-on-one mentorship sessions to address challenging questions • Funding support for one peer-reviewed publication per trainee • Opportunities to contribute to clinician- and patient-facing knowledge mobilization products Fields of study: Take the lead on original IACC research! Applications open Sept 21, & close Nov 16, 2026 Apply at: www.meaction.net/scholars-program

ALT Photo of 4 adults collaborating in meeting room. Text: NEXTGEN IACC SCHOLARSHIP DEVELOP AND LEAD AN ORIGINAL RESEARCH PROJECT USING THE SYMPTOM CLUSTER CHARACTERIZATION IN COMPLEX CHRONIC DISEASE (SC4D) DATASET: ~1.5 MILLION DATA POINTS FROM 2,200+ RESPONDENTS WITH ME & ME/CFS, LONG COVID, POTS, MCAS, HEDS AND HYPERMOBILITY DISORDERS. Scholarship benefits: • CA$15,000 to support 50% research time over one calendar year • Protected access to dataset through the C-BIG platform • Statistics, data stewardship, scientific writing, visualization, peer-review, and clinical and lived-experience translation training • One-on-one mentorship sessions to address challenging questions • Funding support for one peer-reviewed publication per trainee • Opportunities to contribute to clinician- and patient-facing knowledge mobilization products Fields of study: Take the lead on original IACC research! Applications open Sept 21, & close Nov 16, 2026 Apply at: www.meaction.net/scholars-program

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#MEAction Network retweeted
Open Medicine Foundation@OpenMedF
Sep 18
Last day to complete the Understanding Post-Exertional Symptom Worsening in ME/CFS survey. Your responses go directly into CTN Lite trial design — shaping the terminology, outcome measures, and how crashes are defined and measured. 👉 Take the Survey: ow.ly/pImY50ZITNr
Open Medicine Foundation announces last day to participate in ME/CFS post-exertional symptom worsening study closing September 18.

ALT Open Medicine Foundation announces last day to participate in ME/CFS post-exertional symptom worsening study closing September 18.

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#MEAction Network retweeted
AAPD
@AAPD
Sep 18
You’ve made a plan to vote, but now what? There’s more to do before Election Day! One thing we suggest is getting involved at the local level in your community. This can look like many things, so we’ve put together a list of three ways you can take action before Election Day. You can get involved with REV UP and find your local coalition: aapd.com/revup-join/. ID: Blue and red text on a cream background. Three ways to engage in collective action during Disability Voting Rights Week. REV UP has 27 coalitions in 26 states! Join or start one in your area. AAPD will help you! Sign up to be a poll worker! Advocate for laws that support accessible voting, and a more accessible democracy.
Three ways to engage in collective action during Disability Voting Rights Week in bold blue and red text.

ALT Three ways to engage in collective action during Disability Voting Rights Week in bold blue and red text.

REV UP has 27 coalitions in 26 states! Join or start one in your area. AAPD will help you!

ALT REV UP has 27 coalitions in 26 states! Join or start one in your area. AAPD will help you!

Sign up to be a poll worker!

ALT Sign up to be a poll worker!

Advocate for laws that support accessible voting, and a more accessible democracy.

ALT Advocate for laws that support accessible voting, and a more accessible democracy.

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The first ME/CFS CDC meeting since 2024 starts in less than an hour. #MyalgicEncephalomyelitis #MECFS #pwME
#MEAction Network@MEActNet
Sep 17
TOMORROW: The CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call is on Sept. 18th at 3:00 pm ET. Register: ow.ly/jMYn50ZLwsJ Guest speaker: Nancy Klimas, MD. Also featuring program updates from CDC's ME/CFS program staff and a Q&A. #pwME
Announcement for CDC ME/CFS SEC Call on September 18, 2026, from 3 to 4:30 pm ET with registration required. Photo at bottom shows a person on their couch attending an online meeting with a laptop. Blue background with orange accents. Text: CDC ME/CFS SEC Call Featuring a presentation Dr. Nancy Klimas, Director of the Institute for Neuro-Immune Medicine at Nova Southeastern University. Also featuring program updates from CDC's ME/CFS program staff and a Q&A.

ALT Announcement for CDC ME/CFS SEC Call on September 18, 2026, from 3 to 4:30 pm ET with registration required. Photo at bottom shows a person on their couch attending an online meeting with a laptop. Blue background with orange accents. Text: CDC ME/CFS SEC Call Featuring a presentation Dr. Nancy Klimas, Director of the Institute for Neuro-Immune Medicine at Nova Southeastern University. Also featuring program updates from CDC's ME/CFS program staff and a Q&A.

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